First, sorry for the lack of an update, I have been without a computer for several days and unable to post. But in this case, no news has not been “bad news”! My whole body scan last Tues. revealed only two additional infected lymph nodes in my neck; so that was good news.
The nuclear medicine physician and my endocrinologist then discussed my radiation dosage (129 mc). Once the dosage was selected, the actual pill needed to be custom compounded at the nuclear storage facility which is located at the Portland airport. While we waited for the pill to be manufactured and transported to the hospital, I was led upstairs to my isolation room, which was covered in plastic (even the faucet handles were protected by rubber gloves).
The single bright cobalt blue pill arrived in a thick lead case. I was instructed to put on gloves, ingest it with a full glass of water, and then stand on a marked spot to have my radioactivity monitored by nuclear staff. Then they left the room and I stayed sequestered for the next 48 hours without visitors….aside from the nuclear staff who came after 24 and 48 hours and stood on their “x” and me on mine to be checked for radioactivity.
At this point I was (still am) extremely hypothyroid, so was feeling like I was (am) dying. I was also extremely hungry since I had been made to fast all day on Tues., only to realize when I tried to request food that the hospital was not accustomed to providing a “low iodine diet” and had VERY limited options for me (basically a fruit bowl or carrots for the next 48 hours!). “Devastation” doesn’t adequately capture my mood at this point.
As far as side effects from the radiation, I woke on Wed. with acute pain in my salivary glands and ever since everything has tasted like “metal” (even water tastes like “liquid tin foil”). I had read that these effects are temporary, but can lasts weeks to a year. The hardest part has been the hypothyroidism.
After being discharged from the hospital Thurs. afternoon I have been in isolation, keeping my distance from others and limiting any prolonged contact with anyone. I have a list of precautions to follow (in terms of “containing” the radioactivity to myself as much as possible) that I am advised to follow for 18 days.
48 hours after the radiation I was allowed to resume my medication but it will take several weeks to start building back up to normal levels in my bloodstream (I didn’t take the pill and then magically feel any better). I was also released from the special diet which I was SO excited about (esp. after being literally starved in the hospital)…only to find that I can barely taste anything except “metal”.
But each day I creep along towards “better”, even if I don’t actually feel better yet, and look even worse (due to a lot of fluid retention in my face – I now have an unattractive “bloodhound” look).
More updates as I start to emerge from hiding (in another couple weeks!).